July 2022 Newsletter
In this Issue… Notes from Joe · Access to the Best Care Alliance Board Update · Board Update – Welcome Colleen Druzgal, M.D. Alliance Update · Join the Alliance as we Support the NHF United for Bleeding Disorders Walk Challenge Legal Update · Genesis Healthcare Inc. v. Becerra: Reevaluating HRSA’s Regulatory Authority for the 340B […]
Notes from Joe, July 2022
Notes from Joe Access to the Best Care by Joe Pugliese, President and CEO The Hemophilia Alliance hosted one of the more extraordinary meetings held in the bleeding disorders community, June 20 and 21st in Chicago. The meeting was extraordinary for several reasons. First, we had sent out an invite to all members, the three […]
Alliance Update, July 2022
Alliance Update Join the Alliance as we Support the NHF United for Bleeding Disorders Walk Challenge by Karen Bowe, Director Community Relations
Legal Update, July 2022
Legal Update Genesis Healthcare Inc. v. Becerra: Reevaluating HRSA’s Regulatory Authority for the 340B Program by Elizabeth “Issie” Karan, Legal Counsel While lawsuits related to the 340B Discount Drug Program have become commonplace, there is a new important court ruling that jeopardizes the longstanding “patient” definition under the 340B Program. HTCs should expect this lawsuit […]
Washington Update, July 2022
Washington Update by Johanna Gray, Advocacy Consultant All eyes in Washington are turning towards the Senate, which is likely to consider drug pricing reforms as part of a reconciliation package later this month. Whether the final bill comes together remains up in the air – but as of this writing, all 50 Democratic Senators, including […]
Payer Update, July 2022
Payer Update Cost of Dispensing Survey: That’s a Wrap! by George L. Oestreich, PharmD, MPA, Government Payer Consultant The payer team has been working with Mercer on the Cost of Dispensing (COD) Survey project for over a year. The project had two phases – Phase 1: Cost of Dispensing Survey to have national and regional […]
Alliance Board Update, July 2022
Allilance Board Update Board Update – Welcome Colleen Druzgal, M.D. by Eric Gray, Vice Chair We are delighted to announce that Colleen Druzgal, M.D., has joined the Alliance Board of Directors effective July 1st, 2022. Colleen has done a great job of growing her program at the University of Virginia, where she serves as the […]
Gene Therapy Town Hall Meeting NHF BDC Meeting – Follow Up
If you plan on attending the NHF BDC meeting and would like to attend the follow up meeting, please register your spot here!
Gene Therapy Town Hall Chicago 2022 Presentations Are Now Available!
Agenda Gene Therapy Town Hall June 20th and 21st 2022 Chicago, IL Monday 7:30 – Breakfast 8:15 – Welcome – Introductions 8:30 – Gene Therapy in bleeding disorders community – Joe Pugliese (.pdf, .pptx, video) 9:15 – Patient Perspective NHF, Coalition for Hemophilia B – Len Valentino M.D. (.pdf, .pptx, video), Glenn Mones (.pdf, .pptx, […]
Alliance Update, May/June 2022
Alliance Update Harmony in Hemophilia by Karen Bowe, Director Community Relations The Hemophilia Alliance is again collaborating with NHF in support of their 2022 Unite for Bleeding Disorders National Walk campaign and is launching the 2nd annual HTC Wall of Walkers. This initiative is meant to build upon the primary goal of Harmony in Hemophilia […]